After Addy's initial seizure and hospital stay we have had some more developments.
We were discharged from the hospital on Wednesday with orders to receive a 24 hour EEG in 3 weeks. There was talk of an MRI at this point, but the suggestion was to wait until she turned 3 years old. The reason behind this was because usually by 3 years of age the myelin has completely formed around the nerves and would allow us to see if everything there has developed correctly. She had an MRI done at 4 months of age which was normal and will allow us to have a baseline to go on.
The next morning (Thursday), Addy awoke with another fever. This time it was only 100 degrees, but took me off guard since she didn't have a fever the entire time we were in the hospital. I immediately called the pediatrician and took her in for another look. Again, nothing was found. Her fever stayed 100 degrees all day which was good. The other oddity was that she had now acquired a stutter to her speech. Before all of this happened, she did mumble at times while she was processing what she wanted to say, however this was a true stutter. I tried to chalk it up to being developmental.
Friday, Addy awoke with no fever, still a stutter, but had a pretty good day. On Saturday, we had a family birthday party to attend. I was anxious to go and see what Addy's demeanor would be like back out in the environment away from the cooped up house. Addy had a good time, but Aaron and I both could tell she wasn't 100% herself, however it was difficult to put our finger on just what was wrong. We also noticed the stutter seemed to be getting worse. By the time we arrived home from the party, Addy's stutter was so bad she could hardly talk to us. Aaron and I both had pits in our stomachs that something just wasn't right. I immediately called the on-call pediatrician. Thankfully it was my own doc. Her advice was to take her back to Children's hospital.
So Saturday night we ended up back in the ER at Children's. The ER doc didn't seem too concerned as the situation did not seem life threatening to him. He didn't feel it was stroke like since it was a stutter rather than a slurring of words. He didn't want to put her through the unnecessary radiation of another CAT scan because he said the CAT scan from Tuesday would have shown us if their were a tumor or brain bleed. He consulted the on call neurologist who was concerned, but felt the best bet was to undergo a MRI. Problem was, if we were admitted to the hospital, the first time slot for an MRI wasn't until this upcoming Friday. So, they sent us home with a script for an outpatient MRI.
Sunday Addy woke up much more like herself. Her personality was back, however the stutter remained, just not as bad as we saw on Saturday. This made us feel much better. She had a good day and went back to daycare on Monday.
Today we went to an ENT appt. I really wanted her to be checked out to make sure that her throat was healed up from the surgery she had at the end of January. I thought that maybe the lack of appetite, changes in speech, thirstiness could all possibly be related to that. He scoped her and said she was healed fine. That was good news, but again still leaves us with many questions and no answers.
She will be having an MRI on March 18th which she will have to be sedated for. We then have an appt. to see neurology in April. In between then and now we will also be having the 24 hour EEG which has not yet been scheduled. We are hoping and praying for good results from all tests. I will also be consulting a speech therapist from early intervention about the stutter. Please keep Addy in your thoughts and prayers.
Monday, March 8, 2010
Thursday, March 4, 2010
Seizures- They can rock your world
The world that I once knew completely changed this week. I picked Addison up from daycare on Monday and was told that she was very tired all day. Got her home and noticed a 104 degree fever. Took her to the last doc appt of the day where she still had 103.8 fever even with medication. The doctor was unable to find any source of infection after running a strep test and checking her urine. She sent me away and told me to keep an eye on her.
Tuesday I stayed home with her and she woke up with a 100.8 fever. I gave her some Motrin and continued to monitor her the rest of the morning. Every temp reading from that point out was 96, 97 and 98. Normal right? As we sat down to eat lunch, Addy turned extremely pale, keeled over and began not breathing. I scooped her up, thinking that at first she had just fainted, until I realized that she wasn't breathing. I panicked!!! Laid her on the floor and noticed the stiffening of her entire body, her inability to breath and turning blue. The world I once knew in this instant completely changed. As I tried to calm myself to start CPR and grab the phone, the thoughts that ran through my head were terrifying. Because this had never happened before I didn't initially realize that it had been a seizure until she came out of it. The thoughts in my head were "Addison, I can't lose you like this!" Absolutely terrifying. As I dialed 911, she began to get start catching her breath. By the time I was done giving my address and description, she was starting to become coherent and responded to me. At that point, I realized what had just happened- a seizure. The whole episode lasted about a minute and a half to 2 mintues with about 30 seconds of not breathing.
My job has prepared me for moments like this- or so I thought. I have seen many seizures occur in my own students at school. I have witnessed them, dealt with them calmly and have been able to follow medical protocol that I have for those students with seizures. Never before has a seizure shaken me to this extent. It becomes so completely different when it's your own child. Everything you once knew goes out the window and you feel totally helpless.
As the firemen and paramedics arrived, Addy laid in my arms, but was very responsive. She did not fall asleep initially as many do after a seizure. We were transported to Troy Beaumont, because my initial request to be transferred to Children's Hospital couldn't happen until we had been seen by a local hospital. On arrival to Beaumont, Addy received a CAT scan, a spinal tap, blood work and urine work-up. Meningitis was ruled out and all test results came back normal. During this time, she also had 2 other very small episodes that are difficult to tell whether or not they were seizures. One was witnessed by a nurse in which Addy entire body tensed up and she turned blue once again, but the whole episode was extremely short and she came out of it just as fast as she went into it. The next episode was even smaller with no change in color. At this point, opinions from health professionals did not feel as though the seizure was fever related. We were then transferred to Children's for further testing and observation.
On arrival at Children's we were put in a room on the observation floor, admitted overnight and awaited an EEG in the morning with a neurology consult. Every thing else from this point forward remained normal- temperature and blood pressure. The EEG came back normal, however neurology's opinion was that of everyone else's in which the seizure did not sound fever related. I order to have a febrile seizure you have to have a quick spike or decline of temperature in the body over a short period of time. This didn't seem to be the case with Addy. At that point we were sent on our way and are now awaiting a 24 hour EEG in 3 weeks.
Everything within me feels like this is fever related. It's just that gut instinct you have as a mother. The fact that she was sick with something that we think is viral and this occurred during that time just makes me feel as if there was a correlation rather than it being an underlying seizure disorder. Now that worst part about the whole thing is that we are forced to wait and see if it happens again.
I have been off work all week and plan to stay home with her the remainder of the week. After two days at the hospital with no fever, she woke up with a 100.3 this morning. Erghhhh! Back to the pediatrician we went and again nothing abnormal was found. She is definitely fighting a viral infection of some sort, or so we think.
So what now??? During that 2 minute episode on Tuesday, life changed. I watch and question her every move. She doesn't leave my side other than maybe the next room in the house. We slept in the same bed last night and for nap today. How do you leave her alone in a room to sleep when all you have is a monitor to rely on? It might be different had she not lost consciousness during the whole episode, and I am so fearful of that happening again.
The feelings then turn to those of guilt. Guilt because I know that she has to return to daycare on Monday and I will feel absolutely horrible if this happens and I am not there. I so badly wish I could afford to stay home with her, but that isn't a choice. Going to school next year will be easier for me because she will be in a program with personnel who are trained to deal with these situations should they arise. Daycare, however, does not typically deal with kids who have seizures. They are all CPR trained, which I am fortunate for, but it's just different when you know they have dealt with and witnessed seizures before. Tomorrow I will be going in to get a health care plan and protocol in place should this event occur again.
All I ever wanted and all I ever do want is to be a mother to Addison. I now again feel like I have to be so much more. A teacher, a healthcare provider, a therapist. I remember not enjoying her as an infant in the way a mother should. I spent my time worrying, watching, diagnosing and being a therapist. I now feel back at this point. I have to watch and worry and wait every second of every day rather than just enjoying who she is.
This blog has been a great way for me to keep a history of things that happen with her and it helps when I need to go back and refer to times when things happened. I also enjoy the ability that it allows for friends and family to keep updated on her progress. Here are a few pics from our hospital experience. I want to thank everyone for their thoughts and prayers over the last several days.
Tuesday I stayed home with her and she woke up with a 100.8 fever. I gave her some Motrin and continued to monitor her the rest of the morning. Every temp reading from that point out was 96, 97 and 98. Normal right? As we sat down to eat lunch, Addy turned extremely pale, keeled over and began not breathing. I scooped her up, thinking that at first she had just fainted, until I realized that she wasn't breathing. I panicked!!! Laid her on the floor and noticed the stiffening of her entire body, her inability to breath and turning blue. The world I once knew in this instant completely changed. As I tried to calm myself to start CPR and grab the phone, the thoughts that ran through my head were terrifying. Because this had never happened before I didn't initially realize that it had been a seizure until she came out of it. The thoughts in my head were "Addison, I can't lose you like this!" Absolutely terrifying. As I dialed 911, she began to get start catching her breath. By the time I was done giving my address and description, she was starting to become coherent and responded to me. At that point, I realized what had just happened- a seizure. The whole episode lasted about a minute and a half to 2 mintues with about 30 seconds of not breathing.
My job has prepared me for moments like this- or so I thought. I have seen many seizures occur in my own students at school. I have witnessed them, dealt with them calmly and have been able to follow medical protocol that I have for those students with seizures. Never before has a seizure shaken me to this extent. It becomes so completely different when it's your own child. Everything you once knew goes out the window and you feel totally helpless.
As the firemen and paramedics arrived, Addy laid in my arms, but was very responsive. She did not fall asleep initially as many do after a seizure. We were transported to Troy Beaumont, because my initial request to be transferred to Children's Hospital couldn't happen until we had been seen by a local hospital. On arrival to Beaumont, Addy received a CAT scan, a spinal tap, blood work and urine work-up. Meningitis was ruled out and all test results came back normal. During this time, she also had 2 other very small episodes that are difficult to tell whether or not they were seizures. One was witnessed by a nurse in which Addy entire body tensed up and she turned blue once again, but the whole episode was extremely short and she came out of it just as fast as she went into it. The next episode was even smaller with no change in color. At this point, opinions from health professionals did not feel as though the seizure was fever related. We were then transferred to Children's for further testing and observation.
On arrival at Children's we were put in a room on the observation floor, admitted overnight and awaited an EEG in the morning with a neurology consult. Every thing else from this point forward remained normal- temperature and blood pressure. The EEG came back normal, however neurology's opinion was that of everyone else's in which the seizure did not sound fever related. I order to have a febrile seizure you have to have a quick spike or decline of temperature in the body over a short period of time. This didn't seem to be the case with Addy. At that point we were sent on our way and are now awaiting a 24 hour EEG in 3 weeks.
Everything within me feels like this is fever related. It's just that gut instinct you have as a mother. The fact that she was sick with something that we think is viral and this occurred during that time just makes me feel as if there was a correlation rather than it being an underlying seizure disorder. Now that worst part about the whole thing is that we are forced to wait and see if it happens again.
I have been off work all week and plan to stay home with her the remainder of the week. After two days at the hospital with no fever, she woke up with a 100.3 this morning. Erghhhh! Back to the pediatrician we went and again nothing abnormal was found. She is definitely fighting a viral infection of some sort, or so we think.
So what now??? During that 2 minute episode on Tuesday, life changed. I watch and question her every move. She doesn't leave my side other than maybe the next room in the house. We slept in the same bed last night and for nap today. How do you leave her alone in a room to sleep when all you have is a monitor to rely on? It might be different had she not lost consciousness during the whole episode, and I am so fearful of that happening again.
The feelings then turn to those of guilt. Guilt because I know that she has to return to daycare on Monday and I will feel absolutely horrible if this happens and I am not there. I so badly wish I could afford to stay home with her, but that isn't a choice. Going to school next year will be easier for me because she will be in a program with personnel who are trained to deal with these situations should they arise. Daycare, however, does not typically deal with kids who have seizures. They are all CPR trained, which I am fortunate for, but it's just different when you know they have dealt with and witnessed seizures before. Tomorrow I will be going in to get a health care plan and protocol in place should this event occur again.
All I ever wanted and all I ever do want is to be a mother to Addison. I now again feel like I have to be so much more. A teacher, a healthcare provider, a therapist. I remember not enjoying her as an infant in the way a mother should. I spent my time worrying, watching, diagnosing and being a therapist. I now feel back at this point. I have to watch and worry and wait every second of every day rather than just enjoying who she is.
This blog has been a great way for me to keep a history of things that happen with her and it helps when I need to go back and refer to times when things happened. I also enjoy the ability that it allows for friends and family to keep updated on her progress. Here are a few pics from our hospital experience. I want to thank everyone for their thoughts and prayers over the last several days.
Wednesday, February 24, 2010
Fun at a Hotel
Last weekend we met the Coffindaffers at a hotel for a little bit of fun. The kids were excited to go swimming and play together. The hotel had a very nice set up with the pool area being located right outside our hotel rooms along with a play area. Addy was very excited about going swimming. After thinking back, we really hadn't taken her to a hotel before so this was a new experience for her. She slept very well in her own double bed. Lots of fun was had by all. The pics are a little blurry as I totally forgot my camera and had to use my phone:(
Sunday, February 14, 2010
Birthday Parties
This weekend we attended two birthday parties. The first one was for Logan and Landon, twin boys who live across the street from us. They turned 1! After their party we headed over to Isabelle's party who lives next door to us. She turned 2!
Now that Addy understands birthday parties and what they are all about, she was really looking forward to them and had a great time. I would be lying if I didn't say that attending events like this makes me a little sad to see what a disadvantage she has physically with the other kids. It's difficult because she is at the age where she wants to play with them and do what they are doing. When we attend many functions, we find that typically there isn't enough room for her to use her walker which is her only form of independence. She is then forced to sit with us rather than run and play with other kids her age. I can only hope that her time will eventually come. Here are a few cute pics from the day.
Now that Addy understands birthday parties and what they are all about, she was really looking forward to them and had a great time. I would be lying if I didn't say that attending events like this makes me a little sad to see what a disadvantage she has physically with the other kids. It's difficult because she is at the age where she wants to play with them and do what they are doing. When we attend many functions, we find that typically there isn't enough room for her to use her walker which is her only form of independence. She is then forced to sit with us rather than run and play with other kids her age. I can only hope that her time will eventually come. Here are a few cute pics from the day.
Happy Valentine's Day
Addy really got into Valentine's day this year. She was very excited about her party at school and giving Valentines to all her friends. She sat and helped me write out each Valentine. Her contribution was drawing a face on each Valentine as you can see by the picture. She loves to draw and faces seems to be her favorite. For a little girl who came out of the womb with very strange looking hands, I think she's doing a great job. Never in a million years would I have guessed her fine motor skills to be this far along at 2 1/2 years old.
She had a great time at her party which I attended with her. On Valentine's day her and Aaron brought me breakfast in bed which she thought was pretty cool along with a homemade card from her which of course included several faces.
She had a great time at her party which I attended with her. On Valentine's day her and Aaron brought me breakfast in bed which she thought was pretty cool along with a homemade card from her which of course included several faces.
Wednesday, February 10, 2010
Snow Fun!
Addy had a fun time in the new fallen snow today. We didn't stay out long, but it really is one of her first experiences this year with the snow. She went on a quick sled ride at Grandma and Grandpa's house a while back , but never really got out of the sled to play. She has seen Max & Ruby (TV show) make snow angels and snow bunnies on TV and she had her heart set on making one. She tried very hard. She loved throwing snow balls and really wanted to make a snowman, but it just wasn't the right kind of snow. After getting cold outside, we came in and warmed up with a nice cup of hot cocoa....her new favorite thing.
Sunday, February 7, 2010
Low Key Weekend
Well we were suppose to go away with the Coffindaffers this weekend, but instead Addy came down with a bout of pneumonia. So, we canceled our trip and laid low all weekend. Even though she's sick, she has been in great spirits. So what does a little girl do when she has pneumonia? Well, she primps her bear and files his nails as well as gets her own nails painted of course! How fun! Then she falls asleep while playing the computer with daddy. Hopefully we are on our way to recovery.
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